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Wednesday, 25 April 2012

Charlie's choice

Our little lad, Charlie was born with Spina Bifida and hydrocephalus. However, this medical fact is yet to dawn on our 3 year-old. The condition was diagnosed in utero at the 19 week ultasound and left his Dad and I shattered. At that time we spent a week getting advice from experts as to what Charlie could expect in his life- the anticipated disability and any complications. We were told to expect that he would probably have the ability to walk with support, such as a walking frame with the need for a wheelchair for longer distances. He would also have significant balancing difficulties because of the incapacity of his brain to deal with all the fluid passing through it, known as hydrocephalus . (This condition used to be known as water on the brain)

Charlie's 3D ultrasound at 27 weeks. I had ultrasounds every 2 weeks to monitor his growth.

Charlie's birth was early, not quite 36 weeks, but successful. He had surgery at 24 hours old to close the lesion on his back where his spine had stopped growing and was protruding.

a few hours old, a rare moment without all the tubes in

a rear view with the plastic wrap covering his S1 lesion prior to surgery

The initial surgery to close up Charlie's back was a great success, until once we were home and he started to go down hill. A local pediatrician found an infection in the scar on his back and so we went back to the Children's Hospital at Westmead (CHW )for a week with IV antibiotics. Then as time went by other things cropped up such as pyloric stenosis requiring surgery at 11 weeks. At around 10 months he had a VP shunt inserted into his brain to take the extra fluid in his brain from the ventricle to a space next to his stomach. This became blocked not long after and required replacing. Then we had a time when things went smoothly and hospital seemed a distant memory.

Until.. New Years Day 2011. Charlie had another blockage and needed a new shunt inserted. This went well except that the wound over the shunt never seemed to heal properly. The scab came off to reveal the shunt workings in February, and then again in March. Charlie was not himself and finally on ANZAC Day last year a doctor who had never seen him before ordered a stomach ultrasound and found a pool of fluid sitting at the bottom of his shunting tube. Another Ambulance trip to CHW revealed that the fluid was infected with a kind of staph and the infectious diseases department set to work to try to kill it. Before it could be killed the infection baffled doctors by somehow climbing into Charlie's brain. It was a very scary time and the hospital staff worked overtime to cure our little boy. We did a lot of praying, and tried our best to remain positive. And we really did have faith that it would be alright. And Charlie helped. The medical staff often commented that if they hadn't known the facts and tests results they would not have believed just looking at him that he was so close to death.

still finding energy to play even with tubes from his badly infected tummy and his brain

On June 2, exactly 6 months since our first admittance, Charlie was discharged with a clean bill of health. He had 11 weeks in hospital and 8 surgeries over 6 months and finally he was ready to come home. As you can imagine this experience had a huge effect on us all, our older children especially. We were all exhausted but extremely relieved Charlie had pulled through.

And now on with life...We had been home for a few weeks when our local early intervention physiotherapist came for a home-visit. We sat and discussed Charlie's future and Lindy was saying how she predicted Charlie wouldn't be up to doing anything new or challenging until at least December. I nodded my head and thought I should put away the walking frame we had on loan from the hospital. But at the moment Charlie had crawled away from us and the next moment he was walking on his knees pushing the walker in front of him. Lindy and I sat there agog. Charlie!!

and that is when Charlie showed us to never underestimate him,

his desires or

incredible spirit

by the end of July Charlie was walking in his frame although he never really liked the frame

In December, Lindy the physio and I were once again wondering what Charlie would aim to achieve in 2012. She had a Kaye walker that she thought he might eventually be able to use. And then, as he had done before, Charlie crawled to the walker, got onto his feet and took off...

on a Saturday afternoon family walk to the park

..stay tuned for our very exciting news and tomorrow I will reveal the latest talents of our little lad, hopefully including some video (if I can figure out how to upload it). It's nothing short of a miracle.Kate